My dad is in the psych hospital for the second time since August. He was diagnosed with Parkinsons about 2 years ago. With his hallucinations and all his memory problems they now believe he has LBD. Back in August he was in the hospital for a week, they changed his meds and he came out of it and was fairly normal until a week ago Friday when he went back to the hospital. This time he is much worse, doesn't know who anyone is, lots of paranoia and hallucinations and aggression and very combative and angry. I live hundreds of miles away so I am struggling with when do I go home to see him? Will he return to who he was prior to the hospital or is this now our reality? Keep thinking it could be meds but he is on very little now. Any advice would be appreciated. This is the most devestating thing I can imagine. My father was always so strong and a brillant man, I sure do miss him.

Thu Dec 08, 2011 6:04 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: dad recently diagnosed

First, welcome to the forum. It's frustrating dealing with the roller coaster ride of Lewy. My husband was in and out of the hospital a lot in 2008-2009, very combative, but in each case he returned almost to baseline. A couple of times an infection was present which always makes the Lewy symptoms worse. I hope your father is dealing with knowledgeable doctors and that you have access to them by phone. Yes, it's hard on you being so far away. Is there another family member closer to him who could fill you in? Praying for you and sending cyberhugs!

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Dec 08, 2011 6:20 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: dad recently diagnosed

Welcome. I can only echo what Pat said. Hospitalizations in themselves are difficult for anyone with dementia and it takes some time to recover from the hospital experience. Depending on what sent him to the hospital and how effective the treatment is, he may return to or almost to his former baseline. He also may not. I wish there were better crystal balls for us.

I also echo the importance of dealing with doctors experienced specifically with PD and LBD.

Yes, this is a crushingly devasting disease. Hugs to you are you travel on this journey.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Thu Dec 08, 2011 6:43 pm

Pat

Joined: Sun Jun 24, 2007 5:35 pmPosts: 349

Re: dad recently diagnosed

Welcome, Terry. So sorry about your dad.Who the doctor is IS crucial and how LBD aware he/she is. Have they mentioned trying the Exelon patch or Namenda at all? Sometimes one of those can help with the symptoms you mentioned.Since you are not local, can your research online about the doctors who are working with your dad or talk with someone who knows if their areas of interest and specialty include LBD? Another marker to let you know if the doc is LBD savvy might be if they talk about doing only one med change at a time and using low dosages with slowly increasing the dosage if no bad side effects emerge. This is called the "Low and Slow" approach and most good LBD specialists use it.Just prayed for you and your family. Take care.Pat

So sorry to hear about your dad. I think a visit to see your dad would be a good idea.

Who is your dad's primary caregiver? What has that person found out as to the possible trigger of the latest episode and the earlier episode? Is there an LBD expert treating your father when he's not in the hospital?

Thu Dec 08, 2011 8:03 pm

terrykoz

Joined: Thu Dec 08, 2011 5:24 pmPosts: 12

Re: dad recently diagnosed

Thanks everyone for your responses it helps just to hear from others dealing with the same horribleness. My dad is seeing 2 neurologists the hospital one and his which he hasn't seen all that much. His neurologist decreases his cardopa and took him off some the memory drugs he was on so now he is on very little of anything. I will ask about the Exelon patch. Don't know what set him off this time. It sounds like this could be a cycle where he comes and goes. I am thinking if he returns to baseline I should go see him then and bring my kids who are 6 and 3 to see him. My mom and sister are both with him. I keep trying to search for a place for him to go when he discharged any suggestions on that? I guess it will need to be a skilled nursing facility? I keep thinking he would be better off there than in the psych ward but his biggest fear has been that we were going to put him in a "home" but my mom just can't do it anymore. Last time he was in the hospital he was convinced that we were going to leave him there and that infuriated him. Just got off the phone, sister and mom are with him now. Sister thinks he recognized and understood her for the first time in a week! He woke up and wanted to get up and get dressed and get out of there. Is he starting to come around? Should I buy a plane ticket for next week?

Thu Dec 08, 2011 9:07 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: dad recently diagnosed

Welcome, Terry and so sorry for your need to be here. Only you can tell you how soon to go see him. My experience was that when The Big Decline happened and my dad went from living pretty independently to being in a hospital unable to do ANYTHING for himself, he regained a little bit after 3 weeks in a rehab SNF. He learned to feed himself and did that for a few months, he learned to walk again (only with a walker and very slowly) but he gave that up as soon as moved out of the SNF into an ALF. He was incontinent, could not dress himself or do much of anything after his hospitalization. As some have said, their LOs regained quite a bit. Hopefully that will happen for your dad, but for some of us, our LOs just went downhill and regained very little if anything, with gradual and then big declines along the rest of their journey. It is really hard to predict how your dad will be. Do what you feel you need to do. I was 500 mi. from my dad, so I know the issues with travelling and caregiving from afar. My thoughts are with you! Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Thu Dec 08, 2011 9:40 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: dad recently diagnosed

Terry, the hospital can help with placement. It's important that the facility be aware of potential behavioral issues before placement and that he is medically stabilized [at least relatively] before being discharged to a facility. You are right--your mother cannot do it any longer and placing him directly from the hospital is the easiest and best way. Hope things work out well. Hugs and prayers!

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Dec 08, 2011 9:57 pm

aelisabeth

Joined: Tue Aug 30, 2011 1:42 pmPosts: 108

Re: dad recently diagnosed

Hi Terry:

Wow your situation sounds nearly identical to ours. I am so sorry. We went through the exact same thing with the psych hospital, the highly variable abilities, the paranoia. The folks on this site have been amazing. I know that you will find it as helpful and comforting as I have. Like you, I am still figuring things out, but I will say that the Exelon patch has been amazing for my mother. The only problem that I have is that she is also bi-polar and it seems to put her into a manic and paranoid state each time the dose is increased. I hope that you are luckier at finding a good assisted living situation than we have been. Because my mother's abilities cycle so extremely, I can't justify putting her into an actual nursing home. The folks who work in assisted living typically have no idea what DLB really is. My mother is at her 3rd facility now. The people who work at the one she is currently at all think that she makes stuff up for attention. They believe this because she can take care of herself and be calm sometimes and can't others. This has to do with the different levels of dopamine that exists in her system at different times of day. I have had no luck changing their minds. It might have helped if we had had the DLB diagnosis earlier. I would recommend taking materials on DLB with you to the facility (send away for the little flyers and give them to everyone you can who works there). For us, it also was important to discuss behavior problems. My mother has hallucinations and lucid dreams that create really disruptive behavior and assisted living tends to hate this (even memory care facilities). The other MAJOR issue we have had with assisted living is that they are allowed by law to administer drugs an hour before or an hour after the assigned time for a drug. We have had lots and lots of problems with my mother not getting drugs at the correct time (in all 3 facilities). Because my mother has a great deal of anxiety surrounding not getting her drugs and because she actually has physical withdraw symptoms from the Stalevo when the medication has worn off, the absolutely MUST have her medication at the right time to avoid serious pain and behavioral problems. Assisted living facilities do not like to do things that are not easy for them and their staff. Expecting medications for certain patients to be given at exact times really frustrates them and unless you are always monitoring and making a big fuss over it, they won't do it (and we have my mother in very expensive/top end facilities too). Nursing homes tend to understand more about this disease, but if your dad is in the earlier stages of it, a nursing home probably isn't appropriate. Finding a good neurologist with DLB experience is also really critical. My mother was on inappropriate drugs for years. I often wonder if those drugs have made my mother's situation a lot worse than it could have been. If it had not been for me calling the Alzheimer's help group at our local hospital, I would never have gotten put in touch with a doctor with DLB experience (the woman I spoke with on the phone asked me some questions and said - your mother sounds like she has DLB and you should contact the university medical center where they have DLB specialists). Anyway - good luck to you. I hope that your dad has a lot more lucid times and I hope that you are able to benefit from the amazing advice that the care givers and patients on this list offer.

The local chapter of the Alzheimer's Association (alz.org) can offer some suggestions about good dementia care facilities. They can explain the difference between assisted living and skilled nursing, and help figure out which your father may need, though his needs may change later.

Thu Dec 08, 2011 11:43 pm

terrykoz

Joined: Thu Dec 08, 2011 5:24 pmPosts: 12

Re: dad recently diagnosed

dad is refusing to eat now. the nurses asked if we wanted to do a feeding tube or let him go. I feel like it is too soon for that? My mom wants to let him go and sister wants to do everything to keep him alive. I don't know where I stand? I need to go there but my 6 yr old son has a christmas performance on Thursday that I don't want to miss, can it wait until after that or should I go tomorrow?

Fri Dec 09, 2011 4:24 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: dad recently diagnosed

Just my opinion: By all means, attend your son's Christmas pageant. A few days is not likely to make any difference. Regarding the choices: Your mother presumably has medical POA for your father and he was instrumental in formulating his end of life care guidelines or at least willing to permit your mother to make decisions for him based on her best judgment. Trust me, this is NOT a good time for a family to have differing opinions about end of life issues. As a home health and Hospice RN, I have seen the ugly consequences. You and your family will be in my prayers. God bless you! And try to enjoy your children's holiday events. These are so important to them.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Last edited by mockturtle on Fri Dec 09, 2011 4:35 pm, edited 3 times in total.

Fri Dec 09, 2011 4:33 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: dad recently diagnosed

What did your dad say he wanted done when he was of sound mind? Does he have an AD? Who has POA for your dad? I'm assuming it's your mom and hopefully she knows what he wants. There is much discussion on this forum about medical interventions with dying LOs. I would try to get this handled over the phone if at all possible. Personally, I would never allow a LO of mine who is dying of a neurological disorder like LBD to be violated with a feeding tube just to prolong their suffering. Who will benefit by putting a feeding tube in a very ill and suffering person? Some people are of a different opinion and will do anything to the LO to keep them "alive." What is in the best interest of the patient, if the patient has never expressed their views on such matters?Good luck - I know how tough this is. Been there and had to make such decisions about both parents. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

How far away is your dad? Can you go tomorrow and be back by Thursday to see your son's pageant?

Fri Dec 09, 2011 6:56 pm

terrykoz

Joined: Thu Dec 08, 2011 5:24 pmPosts: 12

Re: dad recently diagnosed

My dad is in NE and I am in NC so I must fly, tickets are very pricey they do drop on Friday. My mom has POA but the last several months their relationship has been terrible. She has said horrible things to him and without going into too much hx they haven't had a healthy relationship in a long time and my mom has a lot of resentment and anger that is directed at him. He seems to recognize my sister and told her 2 weeks ago that mom has told him he is an old man and she was going to put him in a home, he has become very scared of her. My sister thinks my dad believes he is in a "home" and every time my mom enters the room he starts crying. He did talk to my sister a little today and he ate a tiny amount of food today. I am trying to enjoy this holiday season with my kids (ages 3 and 6) but tonight we went to a Christmas celebration complete with Santa and I just broke down thinking about my dad, I just couldn't help it, I am so sad....

Last edited by terrykoz on Sun Dec 11, 2011 4:25 pm, edited 1 time in total.

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